The first ever Indo – USA endeavor to create awareness for better Fragile X care in India by The Fragile X Society, India in association with UC DAVIS MIND Institute, USA ; organized together with NIMHANS Bangalore; Indira Gandhi Institute of Child Health, Bangalore; and Centre for Human Genetics, Bangalore; held the second leg of the joint Indo-USA medical symposium at the NIMHANS in Bangalore today. After its successful inauguration in Delhi on 26th February, 2017, The Fragile X Society, India will hold the medical symposium in Kolkata and Mumbai.
The Indo- USA symposium provided a never before platform to expand and develop relationships between Indian and American researchers and clinicians. It was an avenue to exchange knowledge between Indian and American professionals about the latest evidence-based treatments for Fragile X-associated Disorders. Further it also engaged the patient community to expand the reach of the Fragile X Society India.
The Fragile X Syndrome is a rarest of rare condition, which is caused by a change in a gene that is inherited at the time of conception. When the gene called the FMR1, found in the X chromosome undergoes a change and does not function properly, it affects brain functions. It causes a wide range of cognitive impairment, from mild learning disabilities to severe intellectual disabilities (ID) that can impact individuals and families in various ways. Fragile X Syndrome is the most common known cause of autism or “autistic-like” behaviors.
The symposium was supported by Dr. Gangadhar, Director, NIMHANS, Bangalore,Dr. Asha Benkappa, Director, Indira Gandhi Institute of Child Health,Bangalore, Dr. Satish Chandra, Director; Dr. Meenakshi Bhatt, Centre for Human Genetics, Bangalore and Dr. Geetha Patel, IAP local President.
It was attended by eminent doctors and healthcare experts like Dr. Satish Girimaji, Professor, Dept of Child and Adolescent Psychiatry, NIMHANS, Bangalore, Dr. Swathi Shetty, Molecular Geneticist, Centre for Human Genetics, Bangalore; Dr. Randi Hagerman, MD, Medical Director, UC Davis MIND Institute, USA; Mr. Robert Miller, International Patient Advocacy Organisational Consultant; Suma Shankar, MD, PhD, Precision Genomics Director, UC Davis, California, USA; Flora Tassone, PhD, Investigator, UC Davis MIND Institute, UC Davis, California, USA; Stephanie Sherman, PhD, Professor, Emory University, Atlanta, USA; Anne Skomorowsky, MD, Asst. Professor, Columbia University, New York, USA and Ms. Shalini Kedia, Founder Member and Chairperson, The Fragile X Society, India along with other well known doctors.
Speaking at the occasion, Ms. Shalini Kedia, Founder Member and Chairperson, The Fragile X Society, India said, “The awareness levels in India with respect to other countries are considerably low. In the past, for instance in USA, toddlers at the age of 36-42 months were detected with FXS, whereas children in India were diagnosed at ages of 10yrs, 12yrs, 16yrs or even 40yrs.This led to a huge gap in their treatment cycle. With The Fragile X Society, India’s initiative of dispelling ignorance amongst the large population of India has bore fruit. The youngest Fragile X affected child we have seen was just one year old. This has happened only because of awareness amongst professionals.”
The Fragile X Society, India promotes public and professional awareness among the parents and eminent doctors all over India. It extends help to families with affected children in terms of literature, guidance and a deep understanding of how Fragile X can impact families. It holds seminars, workshops and conferences in Mumbai and various parts of the country.
Approximately 1 in 3,600 to 4000 among males and 1 in 4000 to 6000 among females are affected by FXS. Usually, males are more severely affected by this disorder than females. Therefore it is vital to spread awareness among the medical fraternity especially pediatricians and gynecologists’ as well as parents and the couples planning to have a child, so that children with Fragile X Syndrome are detected early in life. Due to advancement in medical sciences, there are many treatments like medication and therapies available at different centres, which significantly improve the quality of life of a child or an individual affected with Fragile X Syndrome (FXS).
The Indian Academy of Pediatrics (IAP), the apex association of pediatric discipline has come forward to support The Fragile X Society, India to take forward the motto of a better Fragile X Syndrome care among the affected individuals in every nook and corner of India.
Extending his support to the cause Dr. Anupam Sachdeva, MD, Director Institute of Child Health, SGRH, President, Indian Academy of Pediatrics (IAP) said, “We have taken this step to come forward and support The Fragile X Society, India, as we feel that awareness needs to be increased in India as far as Fragile X Syndrome and its associated disorders are concerned. Cases of Fragile X Syndrome and its associated disorders are mostly not reported in India. Therefore, we at IAP are preparing guidelines for management of the syndrome, as it is necessary to create awareness among the doctors who will manage the children or individuals affected with FXS and its associated disorders. It is therefore vital to utilize the knowledge gathered from the guidelines so that it can be used for early and better diagnosis of the syndrome and plan its treatment accordingly. ”
The Fragile X Society, India has also partnered with UC DAVIS MIND Institute, USA through which the internationally acclaimed researchers and healthcare experts would create awareness and talk about the advances in diagnosis, management and therapy of Fragile X Syndrome and its associated disorders.
Speaking on the occasion, Dr. Randi Hagerman,MD, Medical Director, UC Davis MIND Institute ,USA said, “Its has been our constant endeavour to create a better life for individuals affected with Fragile X Syndrome and its associated disorders. We are happy to be associated with The Fragile X Society, India for spreading awareness about Fragile X Syndrome and its associated disorders in India. We have been training doctors, psychologists in fragile X, autism and other neuro-developmental disorders through our International Training Program in Neuro developmental Disorders (ITPND).”
Having a child with special needs is challenging in itself and dealing with the social stigma and ignorance surrounding it makes it even more difficult. Such is the case of Fragile X Syndrome and its associated disorders. It is also disheartening to note that the patients and their guardians face social exclusion. The root of stigma lies in the differences in perception leading to lack of awareness which does not allow early intervention in terms of appropriate diagnosis and treatment to take place in such cases.